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The Loooooonnnnggg Road

My name is Alex, I am 33 living in Long Island NY. I was diagnosed around 25 yrs old, and mainly symptom free until I moved back to NY from California almost 3 years ago. A few months after arriving in NY, i started to show more symptoms, blood, mucus, and frequency started to increase as control began to decrease.

Some more about me:

I like to surf.

Symptoms:

3 BM’s a day, mostly formed, appear thin…..better than it used to be, still certainly not “normal” and not quite where id like to be.

The Long Road

So, some of my story is included above, and i have posted on this site a few times in the past. My absolute lowest point was 2 Decembers ago……about a year and a half. I was hospitalized for 7 days, and was barley able to crawl out of there with all my guts still in me (against doctors recommendations) My scope had shown severe pan colitis, and I strained mightily on the toilet to pass essentially all blood an average of 30+ times all day and night. I weighed 120lbs.
I feel as though i am currently well along the road of recovery (even though i was told I would be unable to recover from the severity of my condition), but it seems to be a verrrrry long road. I am used to even a horrible sickness or injury taking weeks or at most a few months to heal. like I said…..my recovery started 1.5 yrs ago. It has been slow, and definately not in a straight line. My purpose for writing is so that if anyone is going through what I have been through I hope maybe my experience can help.

There has been many time where I have thought I was not recovering because I could not see improvement, or sometimes things would even get worse for a while. I have tried many thing during my recovery, and honestly can not be 100% certain on which ones worked or didn’t. I do have some strong beliefs in this area, and would like to share my current regiment as i belive it is the best one i have followed so far. first and foremost, i have followed the specific carbohydrate diet since i was released from the hospital. I can tell you, if it is working for me…….then it definitely doesn’t work fast……..this is a tip for anyone who decides it doesn’t work for them after a few weeks.

Also i have greatly reduce what i eat from the diet. Still no nuts for me. Fruit is just starting a little. These are cautioned in the beginners diet, but for me the time period of introducing them within a few weeks, was just way too soon. I also caution against the yogurt, probiotics, and fermented foods. i think these are all important and beneficial….but need to be started slowly in some cases. i was thrown into a flair by starting out on a high dose probiotic. i found it best to try the yogurt for a bit….then i had to stop….then i brought it back……did this till i could handle it. now i take it like medicine every morning. I also take 1 scoop l glutamine in the morning. im not sure this does all that much, but it doesnt seem to hurt, and i believe i t is mildly constipating…..which for me is good! Next suppliment that i want to rave about a little….because i think it works, and i haven’t seen anyone mention it yet here, its called “intestive”….. you can google it. I dont want to plug them too much, but i really believe that it is helping me, and i hope someone else can find relief with it as well. I take a sacharomices probiotic, as well as a bifido probiotic. I also am currently still taking asacol hd 6 pills a day. my hope is to discontinue the asacol within the next year, and eventually just have a yogurt and fermented food regiment to keep me in remission…..but that is getting a little ahead of myself.

Thanks for listening, hope this helps. I wish you all the best. Thanks Adam.

About Alex

Diagnosed 2005
I am from long island NY, lived in San Diego CA for 8 yrs, just moved back to NY.
Love to surf, and be active.
Having u.c. sucks, but am currently optimistic about conquering, and becoming a better person because of it.

3 Responses to The Loooooonnnnggg Road

Hi Alex,
Like you, I’ve been on SCD (for a year) as well as supplements and it’s been a long road, but I’m moving forward, as are you, and that’s what matters, right. Life is so much better now than it was a year ago, but over the course of the year, I’ve had ups and down and had to tweak my supplements to really get on what I hope is the road to remission. It’s a constant experiment. I sometimes read stories on this site (and others) of people who had miraculously quick turnarounds with SCD or supplements. I so wish that had been me, but it’s not–in all cases for me, the natural route has been a slow one. But a progressive one. I committed myself to 2 years on SCD and I’m half way there, and very grateful for the healing that this diet has given me. Like you, I had to cut back on a lot of the legal foods for the majority of the year. I am finally at a place where I can introduce more, without paying for it. Even some nuts. Fingers crossed. As with you, the yogurt is my morning medicine. It took a while for my body to be OK with that too though. But once that happened, my healing really improved. I’m happy to stay on SCD forever if it keeps me well. I’d really like to hear more remission stories–not necessary how people got into remission as there are plenty of those stories on here already, but more what the steps of remission felt like. For me, it’s been a slow subtracting of symptoms. Glad you’re feeling positive, as I think that’s key, as is a good night’s sleep. Hope the surfing in LI is as good as in SD. Stay well.

Recent Reviews:

I loved your personal story. I felt I was not alone unfortunately my Dr. let my condition go so bad I was malnourished and dehydrated and my bowel perforated, so I had to have emergency surgery.

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Feeling Crappy to Feeling Happy eBooks

Mar 04, 2015byLinda bessette

Loved the story. It encouraged me tremendously. It reminded me I'm not alone fighting this battle. I have encouraged my family to read Adam's story to better understand what I go through.

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Feeling Crappy to Feeling Happy eBooks

Nov 19, 2014byCarol

It was a great story.... I love the way it was well written. It was helpful to understand what is it all about. I really enjoyed them very much. Thanks Adam!

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Feeling Crappy to Feeling Happy eBooks

Oct 14, 2014byColeen Dolan

Adam!! Thank you so very much for this timeline of your life and the impact that UC has had on it....David my other half was diagnosed about 2 months ago and I am his "Michaela" :) I read the entire book in one sitting and he has been following the diet and keeping record of everything that happens following a meal. We are excited for the future for him to begin a normal life again (symptoms for a year...in denial for 10 months...) your story has given us both hope and now it is our go to book when we need some encouragement or help understanding what is going on. Thank you again for this...its has eased our minds on the disease and given us hope!

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Feeling Crappy to Feeling Happy

Feeling Crappy to Feeling Happy eBooks

Oct 04, 2014byMarge Lange

I've had UC for forty two years! It started off in a small way and gradually over the years it has spread and worsened. This year I've been in various stages of flare up since January, it's now October. I was researching, something I do on a regular basis, for some new self-help/research answers when I came across Adam's website. Intrigued, I read on and watched his video then instantly purchased his book. Wow, it's great. I laughed out loud at some of the graphic, though absolutely true, descriptions of what we actually experience during a flare up. Consultant Doctors over here believe in medication not diet for UC. I was interested to read how sugar's a no-no, years ago I told my then specialist that when I was in one of my chocoholic phases within a few days later I started passing blood pr and a flare up ensued. His answer was, you must have IBS as well as UC. I thought GREAT, as if I didn't have enough problems! Now I know, from the info in Adam's book, that diet plays a huge role in controlling UC. I've never had a medic suggest diet for UC although it is widely recognised as being advantageous if you have Crohn's Disease.
Thanks Adam for the link to 'Breaking the Vicious Cycle'. I bought the book, read it from cover to cover and will now be embarking on the SCD proper, so to speak. I have noticed an improvement when not drinking milk, that was a by chance discovery, when I'd not had any for a few days.
I desperately want to be able to get off drugs and control my UC with diet, Adam showed how that can work. Obviously UC will never be cured just kept under our control by diet. I'll let you know how I get on and the results.
When I'm successful in controlling my UC with the diet and off meds I will post my success and give references to Adam's book to NACC - that's the National Association of Crohn's and Colitis in UK. You know how it is, the proof is in the pudding, so to speak.
Speaking of puddings, Adam's recipe book is good and I'll be trying his recipes. A couple of them are versions of what I've devised for myself - great minds or what?!
P.S. I can't get my head around the fact that even nurses and doctors often haven't got the remotest clue about how we actually feel and just how bad it can be. When I make an effort, as always, putting on makeup and dressing well to meet friends who ask how are you, when my reply's rough, their answer's you look well. I reply, it's a good thing I look good on the outside as the inside's crap!
One suggestion Adam, perhaps you could write a book that would educate nurses, medics and the general public. We fellow sufferers lap up the info but what about the healthy?
Thanks very much Adam for your books. Long may you stay healthy now you've cracked it.

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Feeling Crappy to Feeling Happy eBooks

Sep 30, 2014byAndrea

Thank you, Adam, for writing down your story. It connects us all on the globe and since I found this website and read your books I don't feel lonely with my UC anymore.
There are so many things you described in your book I could strongly identify with, like experiencing early symptoms and being blind about them or feeling demoralised about bleeding into the toilet all the time. So many things I recognized, which made me feel so relieved on so many levels. It made me realize I wasn't a nut, that I'm neither stupid nor crazy or a wimp either. We're all just struggling with a really crappy dicease, and thanks to you we're doing it now with a laugh on our faces and a good portion of gallows humour.

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Feeling Crappy to Feeling Happy eBooks

Sep 07, 2014byKathy Harrower

I have found both books fantastic. Couldn't put Feeling Crappy down as it was describing my symptoms to a T, thank you. I have been feeling much better recently. Not sure if it because I am now on 25mg Mercaptopurine alternate days, the fact I am trying to follow SCD as best I can or a combination of both. Can only thank you again, Kathy x

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4.75.08080I loved your personal story. I felt I was not alone unfortunately my Dr. let my condition go so bad I was malnourished and dehydrated and my bowel perforated, so I had to have emerFeeling Crappy to Feeling Happy eBooks

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